Hydrocephalus Association Incorporated

Filing Period

Jan 1, 2012 to Dec 31, 2012

Signed

Nov 15, 2013

Return Version

2012v2.1

Gross Receipts

$2,492,617

Mission

Major Activities

Activity 2

Hydrocephalus conferencethe national hydrocephalus conference was held june 27 - july 1, 2012 in bethesda, maryland. Over 400 patients and family members participated in this patient-centered event, where they heard presentations in over 40 workshops and learned the latest in treatment advances from learned medical professionals. They also learned life skills and how to advocate for their care through facilitated group discussions. The conference provided tools and connections to address the medical, educational and social challenges of living with hydrocephalus and to provide the opportunity for an enjoyable get-together. This event empowered those in attendance to understand, seek out, and put into place care programs and services that meet their needs now and into the future.

Activity 3

Researchresearch programs are one of the key mission areas of focus for the hydrocephalus association. Ha's 2012 chairman of the board, paul gross, was named to the advisory council of the nih's national institute of neurological disorders and stroke (ninds), the council within nih that oversees hydrocephalus research. The association held a meeting with the trans-nih hydrocephalus working group, a gathering of key personnel from a variety of institutes within nih (such as ninds, national institute of biomedical imaging and bioengineering (nibib), and the eunice kennedy shriver national institute of child health and human development (nichd), among others) that have an interest in hydrocephalus. The association also ran a trail-blazing research conference that for the first time brought together researchers, scientists and innovators from a wide variety of disciplines to share the work they are doing in the field of hydrocephalus research and to identify where the best opportunities exist for breakthroughs with future study. The association announced a unique partnership with the rudi schulte research institute (rsri) that resulted in a new round of grant monies being made available for hydrocephalus research. Ha signed a memorandum of understanding (mou) with the hydrocephalus clinical research network (hcrn), committing the association's resources to financially supporting the research work being done at hcrn centers, and announcing that a $500,000 donation had been received to help kick-off the partnership. The association also spent considerable time and resources in 2012 to establishing an adult hydrocephalus-focused network of researchers who, following the hcrn model, will share patient data and will collaborate on studies focused on the clinical treatment of hydrocephalus in adults, including normal pressure hydrocephalus. In 2012, ashly westrick, mph, was hired to serve as ha's research programs manager. She regularly attended scientific meetings where researchers participated in discussions about neurological conditions such as hydrocephalus, and is a frequent contributor to ha's newsletters and blogs with information about the latest research findings. Finally, ha board members paul gross and john kestle, md, undertook a public research landscape project to identify and calculate the dollar volume of public funding being dedicated to hydrocephalus research. The results of this project were compiled into a special report that will be published in a peer-reviewed journal in the near future.

Filer

EIN

94-3000301